Beside The Effects…

Ask any cancer patient and they will tell you – one of the hardest things to deal with is ‘moving on’, especially if they are still on a cocktail of drugs. Everyone assumes that once you’ve been declared NED (no evidence of disease) that you’ll just get on with life, albeit with a new passion and dedication, because, you know, you had cancer and came out the other side. Why wouldn’t you?

The fear of the disease returning or spreading is one thing, living with the side effects of ongoing treatments designed to help prevent this is another. I can now categorically say – after 5 injections and now being clear of it for two months – that it was the zoladex that caused my psychosis. I knew for sure after the second injection that the drug designed to suppress my hormones was doing a lot more to me mentally than it should, it just took the psychiatry services a while longer to catch up. I experienced psychotic episodes after every monthly injection, often with massive distress, olfactory or sensory disturbances, paranoia, heightened adrenaline responses, hallucinations, palpitations, fatigue (who wouldn’t be exhausted?), confusion and physical sensations. All that stopped with the injections, bringing the final conclusive proof that it was the zoladex all along.

I’ve now been fine for almost two months, no further symptoms, I’ve hardly even had a bad day in the normal sense of the word. But that doesn’t mean I’m home free. I still need a hysterectomy and oophorectomy (removal of my ovaries), and I still have to take tamoxifen every day until after I’ve gone through the early menopause that the surgery will cause. Tamoxifen helps to stop oestrogen binding to cancer cells if it does comes back, so it’s vital. It also comes with a range of its own side effects, like hot flushes, achy ankles, feet and knees, visual problems like cataracts, weight gain, chills, nausea, bloatedness, constipation, agitation… These are just some of the many side effects.

Since knocking the zoladex on the head, which lets face it, was giving far more damaging effects, I’ve been much more aware of how much I hurt on tamoxifen. Every morning I hobble downstairs clutching at the banister like a 90 year old to make Ava’s bottle. My ankles seize with every step and if I am carrying her too it’s terrifying. Throughout the day this gets better, but by the evening my feet, ankles and knees have set like stone again, and getting up to do anything hurts. I’ve noticed my vision going in my right eye, with patches of blurry blobs and an inability to focus close up the main problems. I am either extremely hot or extremely cold and don’t seem able to regulate my body temperature in a normal way. It’s like having flu without a virus.

But I’m not complaining. This is how it must be. I just want to make the point that long after the disease is gone, the effects of cancer still linger. And that’s before you get to the mental health issues of living with a possible recurrence. Believe me, I know I am lucky. I’ve seen too many women I’ve met online be diagnosed with secondaries or die in the last two years to not feel lucky. They are living with the disease, as well as hideous side effects of their treatments and the added bonus of not being able to access possible life enhancing drugs that the government have just removed from the cancer drugs fund list.

Luckily my brush with psychosis means I can be referred for tier 2 treatments like ACT (Acceptance and Commitment Therapy), which my psychologist felt would be beneficial given that all of my psychotic episodes were centred around death, either my own or my children’s. Apparently this will help me accept that I have to live with the uncertainty cancer brings, with the side effects of the medications, with the recovery from major surgery and the possible mental health fallout of going through a real menopause, with the side effects of the new drug I’ll be on instead of tamoxifen. I can’t envisage being in a place where I can fully accept cancer into my thinking. It is incongruous with life and makes you challenge the will to live far too regularly. Some days I’m ok with it and don’t give it a second thought and some days I’m terrified. Every day I’m in pain and have to remind myself of the importance of why.

So if you know someone who has had cancer, and way too many of us do, please try and see that for them, it is always ongoing and never completely gone.